making choices in my life': listening to the ideas and...

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Mitchell, Wendy orcid.org/0000-0002-1608-2368 and Sloper, Patricia (2010) 'Making Choices in my Life': Listening to the ideas and experiences of young people in the UK who communicate non-verbally. Children and Youth Services Review. ISSN 0190-7409

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http://eprints.whiterose.ac.uk/11170/

‘Making Choices in my Life’: Listening to the

ideas and experiences of young people in the

UK who communicate non-verbally

Wendy Mitchell and Patricia Sloper

Social Policy Research Unit

University of York

Available online 2 June 2010

Mitchell, W. and Sloper, P. (in press) Making choices in my life: listening to the ideas

and experiences of young people in the UK who communicate non-verbally, Children

and Youth Services Review, (Available online from 2 June 2010).

This is an author produced version of the article published. This paper has been

peer-reviewed but does not include the journal pagination.

Link to the publisher�s online version:

http://dx.doi.org/10.1016/j.childyouth.2010.05.016

DOI: 10.1016/j.childyouth.2010.05.016

http://dx.doi.org/10.1016/j.childyouth.2010.05.016�

http://dx.doi.org/10.1016/j.childyouth.2010.05.016�


3

Abstract

Service user participation and making choices are frequently advocated,

however, they are complex concepts and how they are translated and/or

experienced in everyday life can vary amongst different groups of service

users. Recognising the importance of participation in current international

guidance and UK government policy this paper seeks to explore how

research can include a frequently marginalised group of disabled young

people, in particular young people with learning disabilities and/or who

communicate non-verbally. The paper discusses the use of non-traditional

research methods, especially symbols based interviews developed in an

ongoing English longitudinal study exploring choices and decision-making

processes for young people with life limiting conditions. The paper then

presents some research findings and concludes by discussing their

implications. In particular, the use of symbols based interviews for

informing policy makers about how these young people can be included in

research and how listening to them can inform our understanding of

decision-making processes.

Key Words

Disabled children, Participation, Choice/decision making, Communication

methods, Non-traditional research methods, Learning disabilities


4

Author Details

Dr Wendy Mitchell (Lead Author)


Department of Social Policy and Social Work

University of York

York

YO10 5DD

UK

Telephone number: +44 1904 321950

Fax number: +44 1904 321953

E-mail: [email protected]

Professor Patricia Sloper


Department of Social Policy and Social Work

University of York

York

YO10 5DD

UK

mailto:[email protected]


5

1. Introduction

Current UK government policy advocates young people’s participation in

policy and service development thus aiming to involve children in

decisions about their lives, listening to all children, including those with

learning and communication impairments. This move towards prioritising

and increasing children’s participation has arisen from a number of

sources including the wider UK focus on social inclusion and a

corresponding concern that some citizens, including children, are socially

excluded. The importance of service choice and decision-making is also a

UK government priority and similarly associated with increased

participation and social inclusion for disabled people, including disabled

children. However, disabled children are frequently included less than

their non-disabled peers. This paper seeks to begin to redress this gap by

exploring how disabled young people, especially those with learning

and/or communication impairments, can be listened to using non-

traditional research methods. It draws on research experiences from an

ongoing English longitudinal project (called ‘Choice and Change’)

exploring the choices that young people with life limiting conditions make.


6

1.1 Social Exclusion and Participation

In the UK and Europe, addressing ‘social exclusion’ is part of government

policy and debate (UK Social Exclusion Task Force) but the concept

remains ambiguous due to the complexity surrounding definitions.

Different theorists focus on different aspects of social exclusion.

Bradshaw and Bennett (2007) focus on poverty whereas MacDonald and

Marsh (2005) highlight specific group characteristics such as age, gender

or ethnicity. Children are an ongoing focus of concern (see UK Every Child

Matters, Department for Education and Skills (DfES, 2004) and Children’s

Plan, Department for Children, Schools and Families (DCSF, 2007) but

some groups (e.g. teenage parents) have received more government

attention compared to others such as disabled children. However, disabled

children’s exclusion is complex and multi-dimension as they face material

barriers and also poor service provision and co-ordination (Clarke, 2006).

Participation of disabled children in service planning and participation is

thus important, especially as disabled children are often likely to face more

assessment, supervision and medical interventions than other children

(Franklin and Sloper, 2006a) and disabled children themselves have

indicated that they value opportunities to participate (Mitchell and Sloper,

2001).

The move towards greater participation has evolved from a number of

sources, including UK based legislation and policies advocating greater


7

rights for children, such as the Every Child Matters programme (DfES,

2004), the English National Service Framework for Children, Young

People and Maternity Services (NSF) (Department of Health (DH) and

DfES, 2004); Healthy Lives, Brighter Futures (DH, 2009); Children Act

(2004); and internationally, United Nations Convention on the Rights of the

Child (1989). Theoretical developments presenting children as competent

and knowing social agents (Mayall, 2006; Hill et al., 2004) have also given

their participation credence.

1.2 Participation

Controversy surrounds the concept of participation with numerous models

advocated with different levels and/or types of participation. A frequently

used typology (e.g. Arnstein’s, 1996) is based on a continuum with

progressive participation from consultation through to collaboration and

finally, user control. However, hierarchical models are frequently based on

adult participation and not always appropriate for children. Other theorists

(Hart, 1997) have developed child based hierarchies. Alternatively, non-

hierarchical models have also been advocated (Kirby et al., 2003 and

Treseder, 1997) based on the idea that the highest level of participation is

not always the best or most appropriate for all children and young people.

Not all children want or are able to be the main decider. Children may

need or value adults’ involvement (Franklin and Sloper, 2006b).


8

Past UK based literature has demonstrated that children have increasingly

been involved and consulted by policy makers and researchers in a range

of areas and over different issues in their lives, such as leisure facilities

and health and social care services (Franklin and Sloper, 2006a). A

participation charter (2007) has been developed by children. Innovative

practice clearly exists, (see www.participationworks.org.uk1) but there are

still gaps between theoretical developments and policy guidance and

everyday practice (Carnegie UK Trust, 2008). Some projects focus on

consultation with children but their active involvement is limited. The need

to move beyond ‘consultation’ has been highlighted (Hill et al., 2004).

How children experience participation is also important, past literature has

highlighted that participation can be viewed as tokenistic and even

negative if children are not kept informed after their views have been

sought. Reporting back to participants is important (Cavet and Sloper,

2004).

There are also complex and much debated tensions surrounding

children’s’ right to participate versus associated responsibilities, and for

adults, especially practitioners with a ‘duty to care’, there are potential

tensions reconciling children’s right to participate with their right to

protection (Cousins and Milner, 2007).

1 Participation Works – consortium of six UK voluntary and statutory organisations.

http://www.participationworks.org.uk/


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As Franklin and Sloper (2006a) note, English government policy may

advocate that all children should be included as far as possible in

assessment and decision-making processes, including those who rely on

electronic aids to assist communication or who use non-verbal modes of

communication, but disabled children’s participation has been less than

their non-disabled peers. The children most likely to participate are older

children and those more vocal and socially confident (Franklin and Sloper,

2009, 2006b). The exclusion of disabled children has arisen as Franklin

and Sloper (2009) note, from a range of practical problems and

considerations. For example, a ‘standard’ approach and/or tools are

frequently inappropriate, listening to disabled children can take time and

negotiating access may involve a range of adults, not only parents/carers

but also professionals. For those with communication impairments, there

are also additional problems of patchy speech and language services and

support provision, and inexperienced and untrained practitioners (Berkow

Report, 2008), factors recently acknowledged by the UK DCSF’s Better

Communication plan (2008). Some positive developments have emerged,

especially for those seeking to include young people with communication

impairments (see Participation Works, 2008, Every Disabled Child Matters

campaign2). It is important to redress the marginalisation of disabled

young people as their views are frequently lost, disabled children’s

experiences can differ from their non-disabled peers, and disabled

2 Every Matters (ECM): national government framework developing joined-up children’s

services across different departments. Every Disabled Child Matters (EDCM): English based campaign to develop ECM prioritising disabled children.


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children themselves are a heterogeneous group (Franklin and Sloper,

2006a).

1.3 Choice and Decision-making

The concept of choice is currently a key component of the UK

Government’s modernisation agenda, frequently associated with issues of

consumer rights and increased independence and control for individuals.

In Valuing People Now (DH, 2009) ‘choice’ is a key principle advocated in

planning improved services for people with learning disabilities. Although

targeted at adults, disabled children were recognised as a group requiring

specific support and consideration. This focus on choice has also been

highlighted in the government’s personalisation agenda focusing on adult

individual budgets (DH, 2007). Individual budgets are now being piloted for

disabled children and their families (Her Majesty’s Treasury/DfES, 2007).

The concept of choice is complex and much contested, reviewing the

literature is clearly beyond the scope of this paper but it is important to

acknowledge that there is a large literature spanning many disciplines

(psychological, social, economic). Drawing the psychologically based

choice literature together, Beresford and Sloper (2008) note the

importance of having at least two alternatives and for both to be viewed as

real alternatives with positive values. Choices and the decision-making

making processes that people engage in are frequently multi-dimensional

with many potential factors taken into consideration. Cognitive ability is


11

often discussed, especially, capacity or competence to make a choice

(Beresford and Sloper, 2008). This is an important issue for the young

people in the Choice and Change study.

Cognitive ability clearly needs to be taken into account but should not

exclude people with cognitive impairments from choice/decision-making.

Beresford and Sloper’s (2008) review found an absence of literature

specifically exploring children with cognitive impairments and their families’

decision-making processes. Most studies indicated that adults with

cognitive impairments can make choices or express preferences but this

depends on the level of impairment and the degree of choice complexity

(Connella et al., 2005). Research also indicates the importance of

environment in facilitating children’s participation in decision-making, for

example, access to communication aids, support and the knowledge and

skills of others (Ware, 2004).


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2. The Choice and Change Project

The Choice and Change project explores choices made by three groups of

people (adults and older people with fluctuating or sudden onset

conditions, and young people with progressive medical conditions and

their families) over a three year period (2007 to 2010). This paper focuses

on the sample of young people with life limiting conditions recruited from

two children’s hospices. The overall sample of 27 young people varies in

terms of gender, age (13-21 years), ethnicity and disability type

(www.york.ac.uk/inst/spru/research/summs/DHPpanel.html )

Choice and Change aims to develop project wide research methods and

tools in order to compare the different groups. However, it was apparent

that this was not always possible for the young people. Traditional semi-

structured interviews and research materials based on a written format

were inappropriate for some of the young people (subsample of 123) who

had learning and/or communication impairments. For these young people

non-traditional methods were developed and used.

3 Longitudinally, the number of young people interviewed with the aid of Talking Mats

TM

varies slightly. In round one (spring/summer 2007) 12 young people were interviewed and in round two (autumn/winter 2008/09) 11 young people were interviewed.

http://www.york.ac.uk/inst/spru/research/summs/DHPpanel.html


13

2.1 Adapting research materials and facilitating young people’s

involvement

Using the study’s adult based consent and information sheets as a

template, separate written consent and information sheets were developed

for the young people using simpler and more focused language. Symbols

based information and consent forms were also developed for those

young people with learning and/or communication impairments using two

diverse but general symbol systems - WidgitTM and BoardmakerTM.

The Choice and Change project used short questionnaires to collect socio-

demographic information from adult participants. For the young people,

this information was collected via a cartoon based booklet called ‘All About

Me’. The researcher (WM) and young people with learning and/or

communication impairments completed this booklet before each interview.

The booklet, as Kelly (2007) has noted in her research, was a positive

experience and acted as an important ‘ice-breaker’. The researcher (WM)

was always careful to end the booklet on a positive note with things that

the young person could do and enjoyed doing. This boosted confidence

and demonstrated to them (and their parents) that they ‘could’ answer

research questions. After the interview, each young person enjoyed

receiving a completed copy. The ‘All About Me’ booklet provided the

researcher with important background information and enabled a quick

assessment of each child’s preferred mode of communication and their

level of understanding in an unobtrusive manner.


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2.2 Using Talking MatsTM

The 15 verbal young people from the overall sample of 27 were

interviewed first via semi-structured interviews. Using their responses and

identifying some key themes, 16 simply worded questions were developed

and a range of appropriate symbols identified as potential responses.

These questions were used as the basis for a series of Talking MatsTM.

Each question was printed on A3 laminated card and underneath a range

of symbols (using the BoardmakerTM symbol system) was attached with

Velcro. Participants were asked questions and invited to choose the

symbol(s) that matched their ideas and/or feelings. In each interview the

young person created their own symbols board (the Talking MatTM) with

the researcher (WM).

[Insert Figure1 here]

Talking MatsTM were first used in the UK with adults by Murphy (1998) and

have subsequently been developed for use with other groups, including

older and younger disabled people (Whitehurst, 2006; Rabiee et al., 2005;

Cameron et al., 2004). Other non-verbal methods (e.g. drawing and

puppets) have been used with varying degrees of success with young

children and disabled young people (see Participation Works, 2008) but

these were felt to be largely inappropriate for the young people in this

study due to levels of understanding, age appropriateness and/or their

restricted physical movement. Talking MatsTM were chosen because of


15

their flexibility and ability to be used in conjunction with other

communication systems, they aid rather than dictate participant’s

communication preferences.

Twelve young people in round one and 11 young people in round two

were interviewed with the aid of Talking MatsTM. All the young people

appeared to recognise the symbols (to varying degrees in line with their

level of understanding), liked their colourfulness and enjoyed creating their

own board. The Talking Mats’TM flexibility was particularly useful as the

young people had different learning disabilities and/or preferred

communication modes. For example, some chose from up to 12 different

board-based symbols whereas others focused on two or three. Their

choice of symbols was made through a range of preferred communication

modes, including verbalising, eye-pointing, signing, and moving an

arm/hand or facial expressions. The researcher (WM) was able to

personalise each interview with the aid of the ‘All about Me’ booklet and

the background information it provided.

2.3 Issues arising

2.3.1 The role of ‘others’’

As noted above, past literature has discussed how research involving

young people frequently involves negotiating access via adult gatekeepers

(Kelly, 2007; Ware, 2004). Issues of confidentiality and the need for

parental consent (for minors) also arise; this is further complicated by the


16

social and legal ambiguity surrounding adult status (Morrow and Richards,

1996). For young people with learning and/or communication impairments

there is the additional issue of competence, especially assumptions of

competence and ability to make informed decisions (Cousins and Milner,

2007).

Some parents felt that their son/daughter would be unable to participate as

they were either non-verbal or had severe learning disabilities. The

researcher (WM) carefully explained the project and the use of symbols

based research tools to try and allay parental concerns. This resulted in

some parents reconsidering their initial refusal.

Some parents continued to be anxious that their son/daughter would not

provide ‘appropriate’ data for the researcher and the experience may be

negative for both parties. This fear and negativity illustrates wider issues

and social presumptions; for example, parents had rarely experienced

professionals seeking to involve and listen to their child using non-verbal

methods. It also highlighted that parents can have fixed ideas about data

types and what is required and/or valued by researchers as ‘knowledge’.

Making time to talk to parents, reassuring them and validating the

information that their child could provide was important in the research

negotiating process.


17

Providing opportunities for parents or formal carers to be present during

the researcher and young people’s meetings was welcomed by both the

young people and parents/formal carers. Two young people were

interviewed with a formal carer present (in both rounds); the remaining

young people were all interviewed with a parent(s) present.

Parents/carers provided important background information and had

invaluable interpretative skills, especially when participants used

personalised and/or indistinct modes of communication, such as eye-

pointing or thumb movements. Parents/carers presence also re-assured

the young people. However, it is acknowledged that the presence of

others, especially parents/carers, can influence the context and dynamics

of interviews (Ware, 2004). Open and honest recognition of the potential

role of others is helpful (Mitchell, forthcoming; Mitchell et al., 2009 also

discuss the role of others).

2.3.2 Being flexible

Developing specific and relevant materials and research tools was a

gradual process of cumulative learning for the researchers. Learning from

the young people participating in research is an important part of this

process. Having different research tools available at each interview, such

as the young people’s verbal topic guide, the Talking MatsTM and the ‘All

About Me’ booklet enabled a flexible and more personalised approach with

participants (as far as possible) choosing the research tools they

preferred. Parents/carers were sometimes also asked which they felt


18

would be most appropriate. Young people could and did change their

minds, for example, one young person felt the Talking MatsTM would be

‘babyish’ but on seeing them changed his mind.

The project’s longitudinal nature also helped to facilitate a flexible

approach as the researcher had time to develop appropriate research

tools and utilise and reflect on ongoing learning experiences. For

example, taking a photo of each young person’s personal mat and sending

them a copy was not done in the first round but was in the second

interview.

3. Findings

The paper now reports some findings from the young people with learning

and/or communication impairments who communicated their ideas and

feelings with the aid of the Talking MatsTM. These are drawn from the first

(spring/summer 2007) and second (autumn/winter 2008/09) rounds of

interviews.

3.1 Choice areas discussed

In the first interview, all young people were asked to identify decisions they

wanted to discuss and felt were important. Decisions could potentially

occur in a wide range of areas; however, only four choice areas were

noted: education, leisure, social care and respite services. Within this, 10


19

out of 12 young people focused on education (five) and leisure (five).

Areas such as equipment, health care and housing were not discussed.

3.2 Making choices – general feelings and other people helping

In round one, all the young people (12) indicated that they liked and

wanted to make choices, it made them ‘happy’.4 When they could not

make choices, three specifically highlighted that they felt ‘sad’. However,

making decisions was not always easy, seven young people felt it could

be both ‘easy’ and ‘hard’. When asked ‘what made it easy?’ only five

young people could answer this, but all five felt ‘people talking to me’

helped and three also valued being given and/or having information.

Decision making is often not a solitary activity or process, the role of other

people is important to consider, especially for children with cognitive

impairments. The significance of others helping was clear in both rounds

one and two. In round one, all the young people indicated that they

generally make choices with other people, usually a family member or a

key formal carer. However, three young people were more emphatic that

they made decisions by themselves and liked this but when probed, they

also acknowledged the role of others and that they liked to talk to other

people about choices. None of the young people expressed a desire not

to involve others in decision making.

4 Inverted commas (e.g. ‘happy’) indicate the exact word/phrase accompanying a symbol

on the Talking MatsTM

.


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In round one, participants talked about who generally helped them make

decisions, parents were noted by eight young people and within this,

‘Mum’ predominated (six). When talking about a specific choice area,

young people were then more likely to note the help of other people in

addition to parents, for example, in leisure activities, the role of outreach

workers, youth club leaders, formal carers and friends were noted

When asked how other people helped them, almost all (11) the young

people valued being talked to and within this, five noted the importance of

‘people explaining things to me’ and ‘taking me to visit’ (i.e. see college or

activity and meet staff and/or other young people). For two young people

with severe learning disabilities being shown choice options by formal

carers was also important.

In round two interviews (n=11), the role of others helping young people to

make choices was explored further. Seven young people answered

questions in this section.5 The second interview asked young people to

concentrate on who helped them with a specific choice. For all but one

this was a different choice from that discussed in their first interview,

however, the areas within which choices were being made were generally

the same as in round one, i.e. education (five) and leisure (two). The

young people tended to talk about help received from others in general

terms, i.e. people who usually helped them. Here, as in round one,


21

parents predominated (six), only one young person did not mention his

parents and focused on the help his older brothers had given him when

choosing a college, as both his brothers were at or had been to this

specific college. For the two young people focusing on leisure choices,

the help of formal carers and friends was noted alongside their parents,

especially ‘Mum’.

As in round one, the help that participants noted was ‘people talking to

me’, ‘explaining things to me’ and ‘taking me to visit’ (especially different

colleges or leisure activities). These were all noted equally and most (six)

of the young people felt that the help they had received was ‘just right’.

Three out of five felt that they had asked other people to help, one had not

asked and one could not remember if they had asked or not. However, all

seven were clear why other people had helped them: five felt it was

because ‘they understand’ and ‘I trust them’, two felt ‘they know about the

choice’ and ‘they make my choices’. ‘I can’t make choices’ and ‘I need

help’ was only noted by one participant. More positively, all seven young

people felt they would ask the people who had helped to help them again.

Similarly, most were very clear that they would need help in the future

from other people; only two were less sure.

5 Second round interviews were split into four sections: old/new choices, the role of

others, information and independence, due to variations in concentration span and level of understanding not all sections were answered by all participants


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3.3 Being listened to

In round one, almost all (11) of the 12 young people felt that the person(s)

helping them to make a decision listened to them, only one young person

felt that she was not listened to at school and unsurprisingly, her teachers

and formal carers did not feature during the interview as key people.

When young people were listened to, they expressed a range of emotions

with all feeling ‘happy’, in addition, feeling ‘clever’ was noted by four,

‘proud’ by two and ‘safe’ by one. Conversely, for the seven young people

who also discussed people not listening, negative emotions were

expressed, the overriding one being sadness (six). In addition, feelings of

anger and loneliness were noted (three), confusion and not being ‘grown-

up’ (two) and disappointment by one.

Seven young people were able to explain how they knew that people were

listening, and for them the importance of interaction was clear with six

choosing ‘they look at me’ and ‘talk to me’ symbols. Two young people

also valued active indicators: ‘they write down what I say’ and ‘they do

what I ask’.

3.4 Independence, being ‘grown-up’ and the future

Second interviews explored the role and importance of independence

within choices and decision-making with all participants (n=11). In the

interviews this was described in concrete terms as ‘being grown-up’. All

the young people responded positively to the question of feeling grown-up


23

when making choices, indeed, seven emphatically demonstrated this,

either verbally or physically.

When asked ‘what makes you feel grown-up?’, the most frequently noted

indicators (each by five participants) were: ‘people listening to me’, ‘people

asking me what I want’, people explaining things to me’ and ‘choosing

what I want to do during the day’; ‘being with my friends’ was also

highlighted by three participants. Everyone felt that ‘being grown-up’ was

important to them; eight indicated it was ‘very’ important. Conversely,

when asked ‘what makes you feel like a child/baby?’ the opposite was

clear: six noted, ‘people not asking what I want’, five, ‘people not listening’

or ‘people not explaining things to me’ and four, ‘not being with friends’. In

addition, the role of parents and home was highlighted: ‘people talking to

Mum and Dad and not me’ (three), ‘being with Mum and Dad’ (one) and

living at home (one). Unsurprisingly, this raised negative emotions with

sadness and anger expressed by five, frustration and feeling stupid by four

and loneliness by two young people.

However, parents could also actively facilitate being ‘grown-up’, this was

recognised by nearly all the young people (ten) and also welcomed with

expressions of happiness when people did help; indeed, four participants

felt ‘proud’ when others helped them to be ‘grown-up’. In addition to

parents, especially ‘Mum’, a range of other people were noted; four

different participants noted key formal carers or their siblings or friends,


24

two highlighted the help of teachers, but social workers and

physiotherapists were each only noted by one young person. As before,

the help that was valued stemmed from being listened to (nine) and being

asked what they want (five), in addition, the importance of privacy was

noted by two young people.

Continuing to make choices in the future was also important, when asked,

‘when I’m older, I’d like to make choices about …’, the four most popular

choices were: choosing what I do during the day (seven), making new

friends (six), choosing who helps me with my personal care (four) and

choosing where I live (four), one young person noted making choices

about their health care. As in round one, health care decisions were not

discussed by the young people.

4. Discussion and Concluding Comments

This paper has illustrated the value of using Talking MatsTM to facilitate

communication with young people with learning and/or communication

impairments. Recording young people’s views does not automatically lead

to service changes or policy developments. There is still limited evidence

that children’s participation leads to real change (Carnegie UK Trust,

2008) but this should not detract researchers, professionals and policy

makers from seeking to begin to involve young people with communication

impairments.


25

The Choice and Change project demonstrated that young people enjoyed

using the Talking MatsTM, second interviews showed that they

remembered the Talking MatsTM and felt comfortable using them. This

familiarity boosted confidence and level of engagement. The benefits of a

longitudinal study and continuity of methods are apparent. In terms of

participation, Talking MatsTM enabled young people with learning and/or

communication impairments to participate in the project and provide real

insights into the choices/decisons that they make and want to make, how

they make them and how they feel about decision making processes. This

is important as children’s participation is, as noted earlier, a key English

government policy (NSF/DH, 2004) but as past UK research has

demonstrated (Franklin and Sloper, 2009) participation for disabled

children, especially those with learning and/or communication

impairments, is underdeveloped. The data gleaned here helps to broaden

our understanding of choice and decision making, another important UK

policy (DH, 2009).

However, it is important to acknowledge the limitations of the Choice and

Change study. This paper is based on a very specific project with a

precise group, i.e. young people with life-limiting conditions, 13 to 21 years

old and within this, a sub-sample of young people with learning and/or

communication impairments. Numbers are small and generalisations

cannot be made for disabled young people or even those with learning

and/or communication impairments. The Talking MatsTM were largely


26

context specific, focusing on pre-defined symbols and interviews were

conducted in the presence and with the help of other people. These

influences on the young people’s responses must be acknowledged but

cannot be easily assessed. Longitudinal research, as demonstrated in this

project, can help to begin to address some of these issues, for example,

exploring in more depth areas highlighted in first interviews within second

interviews. Ongoing concern surrounds the reliability of answers people

with learning disabilities give during interviews (Sigelman et al., 1981). As

a longitudinal study the Choice and Change project was able to non-

obtrusively check first interview responses and ambiguities during second

interviews and demonstrated that second round data frequently reinforced

first interview results.

4.1 Young people’s choice/decision-making experiences and what

they value

The data demonstrate that generally young people like and want to be

involved in making decisions about their lives. The decisions young

people chose focused on education and leisure, other areas, especially

health did not really feature. This could be for a number of reasons, such

as participants’ lack of interest or the fact that they are not included in

health decisions. However, it is important to note this absence as UK

government policy advocates disabled young people participating in both

health and social care decisions (DCSF/DH, 2009; HM Treasury/DfES,

2007).


27

Interviews demonstrated that these young people do make

choices/decisions, however, level of understanding is important, as noted

in past literature (see Ware, 2004). Participants do not make choices

alone, other people are involved and this is generally valued as the young

people found it helpful and reassuring. Most young people wanted shared

decision-making, emphasising the importance of being asked what they

want and being listened to by others. The people most frequently

highlighted as helping them are family, formal carers and friends; the role

of parents, especially ‘Mum’ was apparent and ongoing. Conversely,

professionals such as social workers and health care practitioners were

infrequently mentioned. This could be partly a result of the choice areas

and decisions discussed by the young people in this study; especially, the

notable absence of medical decisions. It must also be acknowledged that

‘Mum’ or formal carers were present during the interviews and so may

have influenced the young people’s responses.

When making decisions, the importance of people talking directly to the

young people was clear. Parents played an important role informing

young people, often acting as intermediaries for their child. The

importance of ‘trust’ also comes to the fore as the young people needed to

be happy and comfortable with those helping them. Parents and key

formal carers were frequently trusted as the young people felt these

people knew and understood them and the choices they faced. The


28

young people’s responses also demonstrate the importance of concrete

information presented simply and clearly.

Independence is important for these young people as many are

approaching adulthood. Participants all viewed being ‘grown-up’ positively

and aspired to it, making choices was part of this process. This reiterates

the importance of current UK government policy prioritising independence

and choice for people with learning disabilities (DH, 2009). For these

young people being grown-up was linked to how they were treated by

others, once again being consulted and listened to and also who they

spent time with, especially friends, was also valued. However, it is

important to note that parents had an ongoing role in helping young people

to feel grown-up as they got older, the young people did not expect or

want their parents to be excluded. Shared decision-making is still

important.

4.2 Facilitating participation – thinking more broadly

Lessons learnt from adapting the Choice and Change research approach

and tools to meet the specific needs of young people with learning and/or

communication impairments are now discussed, especially wider

implications for practitioners and policy makers working with disabled

children.


29

The research has demonstrated the importance of challenging traditional

ideas of what participation is and the type of data collected and valued as

knowledge. In doing so, it has highlighted the need for policy makers to

think broadly about participation if they are really going to work towards

improved outcomes for all children, including disabled children.

As noted above, some writers (Kirby et al., 2003; Treseder, 1997) have

argued that hierarchical models of participation are not always appropriate

for, or wanted by, young people. This is clearly demonstrated as the

researcher sought to be flexible and sensitive to the needs and wishes of

the young people participating. The Choice and Change project has also

illustrated, in line with previous research (Franklin and Sloper, 2009), that

involving disabled young people, especially those with learning and/or

communication impairments, is not easy, quick or unproblematic. One

approach does not fit all groups of young people. Having different

research tools to draw on aided the researcher’s communication with a

diverse group of disabled young people.

4.3 Implications for practice: training and development

To help practitioners begin to think more about disabled children’s

participation, especially those with learning and/or communication

impairments, issues of skills, training and confidence need consideration.

A lack of professional awareness of and skills to meet the needs of

children with communication impairments is highlighted by the UK’s


30

Berkow Report (2008) and its corresponding government response

(DCSF, 2008). This is a positive development. Past social work research

(Lefevre et al., 2008) has also noted that the absence of curriculum

uniformity can lead to students receiving very different types and levels of

training. To help practitioners develop skills and confidence when working

with disabled children, communicating with disabled children needs to be

placed clearly on the curriculum (see Mitchell et al., 2009 for further

discussion). For qualified professionals, there is also a need for more

specific ongoing training. Although a number of resources have been

developed providing guidance on communicating with disabled young

people (see Participation Works, 2008), past research with social workers

(Mitchell and Sloper, 2008) has highlighted that knowledge of these

resources is patchy. Raising awareness is clearly a priority area.

4.4 Implications for practice: time and working with young people

Facilitating participation takes time (Cavet and Sloper, 2004). The

longitudinal nature of this project aided researcher rapport, however, time

is a luxury many professionals do not have, as UK based research with

social workers has demonstrated (Mitchell and Sloper, 2008). Recognition

of the extra time needed to work with disabled young people is often not

allocated by employers or acknowledged in government targets/outcomes.

For practitioners to begin to build young people’s participation into their

everyday practice, support is required from all levels within organisations.


31

The complexity of participation and need for professional skills and

flexibility were brought to the fore in Choice and Change by the young

people’s ideas around independence and shared decision-making. As

they progressed towards adulthood and being more ‘grown-up’, the young

people still valued and expected their parents to be involved in decision-

making. The importance of professionals taking a holistic approach is

apparent, listening and working with parents as well as young people, but

this can be a difficult balance to negotiation. Professionals need to avoid

an either/or approach, such as focusing predominately on parents as it is

easier and quicker to ask them rather than consulting young people with

learning and/or communication impairments, or conversely, seeing the

young person as an ‘adult’ and thus independent of their parents, resulting

in parents being sidelined, a situation young people do not want.

Negotiating a balance with each young person and their family clearly

takes time but it is an important part of these young peoples’ participation

and choice making.


32

Acknowledgements

The authors would like to thank the young people and their families who

participated in the study and also the practitioners who assisted the

researcher. The authors would also like to thank all members of the

Choice and Change project team: Hilary Arksey, Kate Baxter, Janet

Heaton, Caroline Glendinning and Parvaneh Rabiee. Special thanks to

Parvaneh Rabiee for her initial advice on using Talking MatsTM and our

conversation during the Choice and Change project when developing the

young people’s Talking MatsTM. The Choice and Change research project

is funded by the UK Department of Health Policy Research Programme.

The views expressed here are those of the authors and not necessarily

those of the funder.


33

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Figure

Figure 1 Example of Talking Mat TM used in the Choice and

Change study

making choices in my life': listening to the ideas and...

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